Last month, we had the opportunity to interview PatientsLikeMe member t1961, who attended ALS Advocacy Day, held May 8-10, 2011, in Washington, DC. What does it mean to advocate for your disease on Capitol Hill? How can you personally make a difference? Check out the interview below to learn why this ALS patient felt the need… Continue reading Being an Advocate for ALS
Category: ALS
One for All: How Medical Research Is Changing Right Before Our Eyes
“I think what’s really exciting is the scale we’re operating under. My PhD was conducted with 80 patients. Last week, I got survey responses from 4,000 patients in a week. That is unparalleled power in the research world.” – Paul Wicks, PhD This week marks the third installment of our latest video series, which explores… Continue reading One for All: How Medical Research Is Changing Right Before Our Eyes
PatientsLikeMe “Express Yourself” Video Contest: Cast Your Vote!
The submissions are in and it’s now time for you to decide the winners of the first-ever PatientsLikeMe Video Contest! We asked “How has PatientsLikeMe changed your life?” and our members have worked long and hard to prepare their answers in these memorable videos. Take a look and vote for your favorite! PATIENTSLIKEME VIDEO CONTEST – VOTE HERE There… Continue reading PatientsLikeMe “Express Yourself” Video Contest: Cast Your Vote!
Raise Your Awareness of ALS (Lou Gehrig’s Disease)
May is ALS Awareness Month. To help spread the word about this progressive neurodegenerative condition, which affects approximately five out of every 100,000 people worldwide, we wanted to tell you a little bit about our patients with ALS (amyotrophic lateral sclerosis). Due to our founders’ personal experience with this disease, ALS was the very first… Continue reading Raise Your Awareness of ALS (Lou Gehrig’s Disease)
One for All (Video): The Road Ahead at PatientsLikeMe
“We’re just getting started on a long road to really impact your individual disease and your quality of life…” Each week this month, we’ll be posting a video interview with a member of the PatientsLikeMe executive team. You’ll hear from Ben Heywood, Jamie Heywood, David S. Williams and Paul Wicks, Ph.D. about what the recent… Continue reading One for All (Video): The Road Ahead at PatientsLikeMe
PatientsLikeMe Refutes Published Clinical Trial
Congratulations to our R&D team here at PatientsLikeMe for its most recent paper published in Nature Biotechnology (“Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm”). The full paper has been made available by Nature so you can read the results and access all of the supplemental data and figures. Below are… Continue reading PatientsLikeMe Refutes Published Clinical Trial
Hawaii 5-0: PatientsLikeMe at AAN 2011
Here at PatientsLikeMe, we are not only focused on helping patients improve their health outcomes, but also on the cutting-edge research that enables those improvements. That’s why we couldn’t imagine better news when we learned that all five of our academic submissions to the American Academy of Neurology (AAN) were accepted for exhibition at their… Continue reading Hawaii 5-0: PatientsLikeMe at AAN 2011
PatientsLikeMeOnCall™: “A Look Ahead” at Openness in Healthcare (Episode 4)
“I think we can see there are a lot of ways where openness can be powerful. What’s necessary is to help facilitate openness and reduce the barriers to sharing medical information.” – Ben Heywood PatientsLikeMe Co-Founder Ben Heywood has blogged previously about openness and sharing – and how important they are for patients. In this… Continue reading PatientsLikeMeOnCall™: “A Look Ahead” at Openness in Healthcare (Episode 4)
PatientsLikeMe Calls All Patients With Any Condition to Join
Today, PatientsLikeMe announces its expansion in the following news release. (You can click on the image on the right to see a visualization of real-time profile views on PatientsLikeMe.) ***** CAMBRIDGE, MA–(Marketwire – April 11, 2011) – Today, PatientsLikeMe (www.patientslikeme.com) announces the expansion of its platform and invites patients with any condition to join. The five-year-old… Continue reading PatientsLikeMe Calls All Patients With Any Condition to Join
What Kind of Scars Do You Have?
A recent search of the PatientsLikeMe forum reveals that there are thousands of posts that mention the word “scar.” Looking closer, you’ll see that there are discussions of physical scars – for example, from certain procedures or diseases – as well emotional scars. One moving thread – entitled “A letter to help others understand you… Continue reading What Kind of Scars Do You Have?